Friday, May 10, 2013
Through challenge there is victory -
Bryce weighs this morning 17.066 lbs. I did it. We even reached this goal without the feeding pump. I just couldn't figure out how to get so many calories in at night without using 3 bolus feedings. Our next goal is 20lbs so he is closer to 3-5% on growth chart.
My non dairy diet is working. He went from 16.6 on May 2nd to 17.6 lbs this week.
Some of you know, on top of everything else, some SMA -moms in one of my online groups, started being pretty judgmental and cruel this week. - Others chimed in and others told me that's how it goes in this world. Try to not take it personal. I have a hard time with that and so I have made some adjustments to this blog recently and I am trying to be clearer in my wording - I still think its mean for other mom's to tell me "I am killing my son", or I have "crappy doctors" or that "I don't fight enough to extend the life of my son." It is our choice of quality of life for our family and for Bryce and we do feel we have an excellent primary care doctor, Dr. Nicols. He is a pulmonologist and has worked with SMA children before. He will tell us when Bryce needs to be on Bipap or we need to consider changes in our care plan.
My blog about our journey is not for sympathy or to complain, - in all reality I have hoped this blog has been a way to share our story and there many happy stories. There is also life with SMA. We don't have other children at this time. We are all about Bryce - so I think some SMA parents perhaps forget that they are blessed with fertility and healthy children -
Bryce does not fit into the regular DX of type 1. He is stronger and as a result of us choosing to not to do BIPAP or to not do vivonex formulas at this time, that doesn't mean we won't - that doesn't mean we are shortening our son's life. We don't live in fear of change - we are very intelligent parents who don't believe a cough assist machine strengthens muscles it only assists a weak cough and is helpful during an illness, it may be more helpful when he is weaker to prevent illness, but for now, our son can cough and breath very well on his own. I wake up every morning excited to see my baby's smile and coos, and I thank God for each day with him.
For the time being our way to care for our son can be either palliative, non-invasive, etc and we shouldn't have to justify ourselves to others. We should all me loving and kind, but apparently there are moms out there who feel its life or death - I learned that I must be naieve - as all new parents are at first, so that's apparently my first big lesson in being a mom.. Its not fun being bullied on the internet - AA Diet website, when I was just asking for help with some recipes, high calorie food/puree etc.
Bryce excels in his social skills. He is talking and babbling - making all kinds of sounds - he loves to kick and reach his hands over his head.. he stacks object and puts cups together, he splashes all around in the tub, he loves reading and turning pages - he loves to laugh and play. he loves stroller rides....going to zoo...I love being a mother -I love my baby so much.
Many of you know with Steve being out of town, its been pretty challenging but with help from friends its been more bearable. Cousins came over to garden this week. My amazing MOPS group set us up with meals for awhile. This is very helpful on the feeding schedule we are on. These days are gorgeous and sunny. We are inside most days but that's ok. Bryce is eating by mouth again and accepting his bolus feedings even better and with more volume. I am learning to live with little sleep like last night being awake from 1:45 - 3:30/4 am -holding, feeding, and comforting my son..
Its true, there are not so many resources in our state and no sma organization- we just fall under the umbrella of the MDA (Muscular Dystrophy Association.), so if there is ever a reason for starting a non-profit for SMA kids and other kids with rare diseases...its now...its up to me...I must make a change. So far, I am starting little by little- I am advocating for my son in Salem and meeting with local representatives to bring awareness and to ask them to fund EI and state programs even more. I am learning
I found a lawyer at the Oregon Disability Rights Association who kindly took our case to appeal his denial of developmental disabilities. This has been huge issue for us, we have been unable to get any care from the county and from the state because they never have given an SMA child this before and instead of reading the facts - they prejudicially denied us. Other parents have fallen under medically fragile programs and if you live in the state of Washington, they seem a bit more accustomed to children with SMA. Fortunately, by having a legal representative they are willing to look again as his new Early Intervention Test scores and the letter from his neurologist at Shriners states that SMA DOES originate in the brain - so as far as the Oregon Administrative Rules - our son only needed to have documentation for which I read back in January and knew my son met: the two areas of disability such as self care and Motor Skills As well As the disease originating in the brain. My question now since this is proven...will the state of OR follow through....will they back date some financial aid because they so quickly dismissed our application?? When will help via case management...other resources, and respite care begin?
We hope our appeal of federal SSI on the compassionate allowance is approved in the near future. We were denied in November of last year.. This will really help.
We hope our doctors will also start too get paper work in so our insurance can approve some nusing help. Unitl then, we are on our own, or paying out of pocket. I don't want to leave our beautiful home, I can't exactly go back to work. We may have to do another fundraiser this fall to raise money for the nursing, continuous medical pile ups, and and so on that are making our financial situation more difficult. I love our home and being able to provide a comfortable and healthy place to live -
I feel that we have asked so much of friends and family its time for the state and federal programs to start kicking in and getting approved like all the other SMA families. This will be great.